A Hard Lesson to Learn

Well Darlin' Forrest, you have made great use of the healthy months since your last surgery in July.  You have worked so hard at your recovery; gaining physical strength, improving your memory, fine tuning your legendary wit, attending college class, performing in the Same Sky Project, fundraising for CCI and APTB, and embracing yoga and meditation.   We had hoped that Dr Kumar would get his wish for you...a whole year without any surgery.  Unfortunately that is not to be, but all your hard work has you "optimized", as Dr Kumar says, for what lies ahead.

For the past few weeks, we knew trouble was lurking in the changing shape of your noggin. The bone grafts so carefully constructed by Dr Kumar in March were becoming more prominent and sharp edged.  The titanium plates that used to be visible only on CT scans, were clearly discernible through the increasingly taunt  skin graft. Appointments with Hopkins' hydrocephaly specialist, Dr Luciano, were moved up and Dr Kumar received weekly photographs of your changing profile, hoping to delay surgical intervention, at least until December.  On Friday we traveled to Hopkins again.  Our return was brightened by warm welcoming smiles from Erica and Melody, staff who have come to know you and enjoy your and Toliver's visits.  Dr Kumar's smile was more restrained, worry clearly visible on his face.  He affirmed our growing concern that, without intervention, the progressing tension was likely to result in an imminent breakdown of the skin overlying your bone grafts, exposing the bone again to infection and calamity.  We can't let this happen. Pre-op labs were drawn and Kumar consulted with Dr Luciano. They agreed that your shunt, which should protect you from high CSF pressures, now appears to be over draining your CSF, collapsing the skin around your reconstructed skull. This over drainage is exacerbated by gravity.  And when you are upright standing tall and strong as you've worked so hard to be, the shunt responds by draining too much CSF from your amazingly resilient brain!   What a paradox!   The doctors agree, this can't wait any longer.   

The plan now is to tackle the problem in two stages. The first step is to improve your shunt performance.  Next Wednesday, Dr Luciano will surgically place a new programmable valve in the shunt line at the level of your chest. Hopefully this new valve will stop the over drainage of CSF and resolve the problem so you can get back on track.  We expect to be at Hopkins several days after the surgery until they are happy with the settings and your new equilibrium. Our vision and prayer is:  Your skin stays intact until surgery, all goes well at Hopkins next week, the new valve allows your CSF to stabilize taking the tension off of your grafts, you regain your amazing trajectory, and you travel safely to Kansas City next month to perform the Same Sky project with your APTB cast at the American Music Therapy Association conference!  That's our vision and prayer for you.  

The second step, after the CSF issue is resolved, involves a bigger surgery scheduled on December 4 to complete the reconstruction of your skull in time to heal for Christmas!    You are strong, resilient, optimistic, funny, loved, and blessed in so many ways.  We've worked hard to get you out of bed and moving (over 10,000 steps on your own in one day recently, according to your fit bit!) Now the challenge is for you to stay down, feet up and resting until Wednesday!  Why does that seem so hard?  Because you have become a man of action, moving always toward the next challenge, the next opportunity. And to be fair, you are genetically challenged when it comes to the patience department. So we will practice patience until we learn this lesson together;   to center ourselves, to breathe, rest, and find our inner calm....while we envision your future....healed, joyful, and moving confidently again toward the next horizon. 

Practicing Chillin' - something you used to be really good at before the hard work of recovery began... 

With love and gratitude for our loyal friends, devoted family, unshakable prayer warriors, and brilliant caring doctors. 

Mum

Our family together again!

With Austin and Martin (now 6months old!) home from Duke for fall break we crammed as much living as we could into this fabulous family week together!  

The Fall Races At Glenwood Park is such a terrific venue to spend time with family and catch up with lots of friends. 

Corina and Forrest. Just like the good old days.... But wait THESE are the good old days! 

Sunday we visited a friend recovering from a TBI at Walter Reed Hospital. These visits meant so much to us when our family spent long months in the hospital with Forrest and it was good to be able to pay this gift forward. 

Monday, Austin with Martin and Forrest with Toliver spoke about canine communication to Mr. Lyman's incredibly bright and engaging fourth grade class at Hill School.  I was such a proud Mama Bear listening to Austin and Forrest share their perspective on the impact Canine Companions for Independence has had on their lives as well as their love for, and communication with their CCI dogs. 

The first time we visited Hill School after your accident you were unable to talk, Forrest. But the teachers and staff took turns sitting by your side and recounting their memories of your years at Hill with you. That day they shared their unshakable faith in you as well. So this time, listening as you chatted up a storm with Hill teachers and staff after your presentation was especially poignant, as the Hill community has played such a huge role in your recovery.

Wednesday, Forrest loaned his horse Riley to Austin so we could share a day of hunting over the glorious Virginia countryside once again.  

Thursday, Forrest, Austin and I joined our QGM crew for our annual International Coastal Cleanup Project. Our group picked up 50# of trash, including 107 plastic bottles, from  the banks of the Potomac River. Last year Forrest,  you had to stay on the main trail.  This year, with Austin and JP's help, you scrambled down the banks and made your way along the rocky shoreline!

Friday, Austin & I got to join the audience at Harper Park middle school for the Same Sky Project performance. It was stunning to watch how much you and the rest of the cast have progressed! The students were blown away! 

Saturday, Gio brought his and Shayna's new adorable CCI puppy, Yaeger, to meet his CCI cousins, Toliver and Martin! It was puppy Mayham playtime followed by a breather for photos. 

After a terrific hunt breakfast at the Davises (where somehow we failed to take a single picture), Saturday night you and Austin are "dressed to the nines" for the Windy Hill 70s themed gala at Salamander resort.  Of course you ended up dancing on stage with the Rock On Band. It must have been great PT because you topped 10,000 steps on your fit bit Saturday!!!

Sunday, This afternoon we had to say goodbye to Austin and Martin as they head back to their masters studies at Duke.  

We miss you both something terrible.     Austin, You brighten up our days and replenish our souls, as only family can. 

Safe travels. Counting the days until Thanksgiving and you both return to BrightWood.  Love Love Love you,

Mom Dad Forrest and Toliver too! 

Overcome with Gratitude

We've been blessed in so many ways along your journey Forrest.  This week-end we had amazing opportunities to give back to the two non profit organizations who have helped you the most. 

On Friday after speaking in two Same Sky performances at Saunders middle school on the far side of Manassas, you rallied and spoke again at the CalKaine Cares formal fundraiser benefiting CCI at Salamander Resort. It was terrific to be there with other CCI friends including beautiful  Caroline her charming CCI companion, Shelley!    

Your talk about the many ways that Toliver has enriched your life and supports your recovery gained a standing ovation.  

We all kind of got carried away with the evening as you began to bid on the first live auction item, an hour training session for four with Pierre Garcon, wide receiver for the Redskins.  As the bidding topped $3000 you looked to your Dad and questioned, "what should I do?"  His reply, "Go For It!  And you did...placing the winning bid at $3800.  Ouch!! 

On our way out the door the organizers approached you and said how much they appreciated your speech and to not worry about checking out that they were going to underwrite your hour with Pierre Garcon!!!  What a terrific gift!!!

And Friday night was just a warm-up for our own Saturday night fundraiser for the Forrest Stone Allen Financial Aid Fund at A Place To Be in conjunction with the 2015 public premiere of Same Sky! The weather forecast was so dismal our event was moved from BrightWood to Hill School. No problem.  All hands on deck.  Let's relocate this event and we did!    With the help of many incredibly generous volunteers, including eight of your faithful life long friends, last night we raised $62,000 to help children and adults who might not otherwise be able to afford music therapy!  

Tom, Kim and all the staff, mentors, and fellow clients At a Place to Be have given so much of themselves to help you and your recovery. There's no doubt in my mind you would not be where you are today without their talent, devotion, compassion, encouragement and friendship.  Throughout your journey A Place To Be has taught us that sometimes the best way to heal ourselves is to lend a hand to someone else.  

You and fellow Same Sky cast member, Megan, celebrate in the lobby of the Hill School theater, under a sky full of clouds.  Each cloud representing the name of a donor to the FSA fund.  It was truly a breath taking moment to emerge from the theater and see this beautiful visual testimony of our community's generosity.  We are truly blessed!  

Good night Champ. You and your pal Toliver done good. Sweet dreams. 

With Love & Gratitude,

Team Forrest 

So Much Love

Darlin' Forrest, we have been blessed with so much happiness, exciting new activities, healing progress, and boundless love that it's been hard to find time to update the blog! So in an effort to just catch up I'll post a couple of the many highlights over the past few weeks: 

Middleburg Labradorables Rocked the CCI Dog Fest on Sept 12th! Tami and your lifelong pal Madison drove in to Washington DC with you and Toliver the night before Dog Fest. Your excursion included a visit to the Natural History Museum and you all enjoyed dinner with Sarah, Megan and Peyton! 

Your team rallied and completed the walk despite the drizzly weather! 

Caroline and you, along with Toliver and Shelly of course, are recognized as co-captains of the second highest $$$ team of the event! Collectively you raised over $10,000 for CCI, twice your goal, thanks to the generosity of friends and supporters!!!

You did a fine job addressing the crowd and explaining the many wonderful things that Toliver does for you. Toliver even demonstrated how he can "WOOF" for help when you ask him to!

You have added healing Yoga to supplement your already rigorous schedule of PT and Pilates! Under Vinaya's guidance, and with Ben matching your asanas and spotting you, you are enthusiastically learning to breathe deeply, stretch in new ways, and practice meditative stillness!

    Ben and you: Two new Yoga Warriors! 

Sharing the Love:  We've been so blessed by countless earthly angels who have shone the light of their faith onto our darkest days, lightened our load, cheered each milestone, and helped us stay strong no matter what lay ahead.  Today you were able to shine your own light on another family still early in their son's journey of TBI recovery. 

I remember so clearly the day that Beth Gayle and her son, Gip, strode confidently into your hospital room at Shepherd Hospital in Atlanta. You had suffered another terrible setback and Shepherd told us they could no longer help you. We were adrift, lost, our faith and hope faltering. Gip had recovered from a catastrophic TBI himself and on that day he stood so tall and strong and I swear he wore your smile. Their visit and stories of Gip's miraculous recovery filled us again with hope and encouragement that anything was still possible. And it was. 

Today you put your arm around Joshua's mother Gini, flashed that confident crooked smile and thumbs up of yours, and charmed her with stories of your friends and activities. My prayer is that we are able to pay Beth and Gip's Blessing forward and in some small way brighten Gini and Joshua's journey. We are already looking forward to a visit for you and Toliver to meet Joshua so you can continue to share the love and your message: Anything IS possible! 

God Bless all our Angels,

Mum

Great Check up today!!!

You are on your way again Champ! With Tami and Pops help we got off early this morning for Johns Hopkins and your seven week postop CT scan and follow up exam with Dr. Kumar.  

The CT technicians follow your blog and know you and Toliver by name! Scott was happy to see you looking so strong  and happy! Peeking over his shoulder as the CT loaded onto the computer I had a wonderfully optimistic feeling. 

After examining your scalp, reviewing your blood tests, and comparing your CT scans from before your July surgery to today's images, Dr. Kumar proclaimed to us that he was "SUPER happy!!" The bone grafts are healing and your CSF and brain have both enlarged dramatically. He commiserated with you saying "Forrest, you've been through a lot". Your respectful reply, " Yes sir, I've been to hell and back." "Well then," Dr K. said, "you should have a break from surgeries, enjoy being 22 and just living!"  

Sounds great, right?!?   He did explain that there is still a gap on the right side of your skull that will require more surgery.  Dr K. is planning to use bone grafts from two of your ribs to close the remaining gap, but wants to wait a full year to give you plenty of time to heal, make sure all of the infection is gone and that you have a chance to "enjoy living"! 

So after a double serving of Dullce de Leche gelato off we went to the Renaissance Harbor Hotel. Perhaps we'll have celebratory steak at the Capital Grille tonight.  Then early tomorrow morning back to Johns Hopkins Interventional Radiology to have your Hickman central IV line removed! YAYY!!!

And tomorrow  after yoga you have your first rehearsal for the Same Sky 2015 production!  Could there be a better way to start the next chapter of your journey than spending time with the cast & crew of Same Sky?!?!   Can hardly wait to see the public performance October 3 at the Hill School!!! 

Breathe deep and enjoy! 

Love and Peace,

Mum

Lots going on!

Hey Forrest, it's hard to keep up with you these days.   There's so much great stuff happening!

A busy day at the Brightwood "Beach" before Austin & and Martin headed back to Duke. We sure miss them both! ( Sorry Shayna I cut you in half!)

A rousing evening of croquet and good cheer with the Weedens...

...including a very close round in the dark with lifelong pal Nick!  Though Nick kept a close eye on your balance, Just watching you move independently around the course in the dark took my breath away! 

Remembering more than a year when we could barely open your mouth, it was a sort of celebration when Dr. Gallegos fitted you with your new Invisalign  retainer! Your observation, " It's kind of cool since it's not a big scary life altering procedure! " 

Shaka for sure! Hanging loose with Tami on the way to your first on campus college class at NOVA!  You were "cool as a cucumber".... While Tami and I were both a nervous wreck, wanting so badly for it to go well for you.  

No need to worry with Toliver tucked half way under your chair.... You Got This!!!

Every afternoon at 4:44 we try to take a moment, breathe deeply, and give thanks for our many blessings. There are so many; your continued recovery, great friends, our loving family, Toliver,  your amazingly supportive community of doctors nurses therapists and prayer warriors, and a chance to pay it forward by supporting wonderful organizations like CCI and A Place To Be! 

With a heart full of love and joy,

Mum

PS: We are so focused on the magic of now and the bright possibilities for the future that someone had to reminde me it was a year ago today that you spent 14 hours in the OR. What a difference a year makes...God bless Dr Kumar and the wonderful nurses at Johns Hopkins that got us all through that day! 

Dog Days of Summer

Forrest,

You've made amazing progress since your latest surgery several weeks ago. I hadn't seen you in over a month and was shocked to see how strong, fast and witty you were when I returned. Your gait is stronger, your voice is clearer and louder, you come up with funny retorts quickly, and overall you have more energy than I last saw you.

Despite the progress, it's still pains me to see you frustrated so often. We talked the other night about how you felt more like "you" and more independent. You've come a lot further toward independence these last four and a half years, and I can only imagine how hard it must be to have Tami, Mom and Dad, and others around you keeping you safe and reminding you to complete tasks, take meds, etc. Just know that we are here for you, through thick and thin, and with each year you're able to do more and more. As many docs remind us, frustration can be a motivator and an important step in TBI recovery. I hope one day you'll be tackling life on your own, but until then, lets cherish the good moments, and work through the tougher ones together. 

I want you to know how much it's meant to me to see your and Toliver's relationship grow. If I can help someone else have even part of that, all the work with Martin will be well worth it. I know it will be bittersweet and challenging to see him matriculate into "college" in a year and a half, when I turn him in for Advanced Training. However, I've seen how you and Toliver help each other grow, and I know Martin can do the same for someone else. Thanks for inspiring me to take on the challenge of puppy raising for CCI, I wouldn't be here without you. There's still time for people to join the CCI Dogfest Team you and Caroline created, the "Middleburg Labradorables." Anyone that wants to join the Sept 12th walk in Arlington or donate can click the "DogFest" link on the right side of the blog, or click here. 

We had many fun outings this week, including the National Geographic Museum(it's amazing, check it out!) in DC and an awesome afternoon at Chuck E Cheese. By the way, I think Chuck E Cheese should be the national service dog graduation test.. with the lights, sounds, pizza smells, and boatloads of manic kids, that place is a superb test! Tollie had a cool head as always. 

-Austin

Building endurance for the Dog Fest walk.

A toasty get together at Salamander;  Martin's first exposure to fire!

Tami and Forrest take on Guitar Hero at Chuck E Cheese.

Forrest and Toliver inspecting otoliths at Nat Geo Museum.

OUCH!! Arapaimas hurt, who wants to visit the Amazon?

Passing out CCI Fundraising invitations around Middleburg.